Literature DB >> 22223062

Communication about DTC testing: commentary on a 'family experience of personal genomics'.

Anna Middleton.   

Abstract

This paper provides a commentary on 'Family Experience of Personal Genomics' (Corpas 2012). An overview is offered on the communication literature available to help support individuals and families to communicate about genetic information. Despite there being a wealth of evidence, built on years of genetic counseling practice, this does not appear to have been translated clearly to the Direct to Consumer (DTC) testing market. In many countries it is possible to order a DTC genetic test without the involvement of any health professional; there has been heated debate about whether this is appropriate or not. Much of the focus surrounding this has been on whether it is necessary to have a health professional available to offer their clinical knowledge and help with interpreting the DTC genetic test data. What has been missed from this debate is the importance of enabling customers of DTC testing services access to the abundance of information about how to communicate their genetic risks to others, including immediate family. Family communication about health and indeed genetics can be fraught with difficulty. Genetic health professionals, specifically genetic counselors, have particular expertise in family communication about genetics. Such information could be incredibly useful to kinships as they grapple with knowing how to communicate their genomic information with relatives.

Mesh:

Year:  2012        PMID: 22223062     DOI: 10.1007/s10897-011-9472-8

Source DB:  PubMed          Journal:  J Genet Couns        ISSN: 1059-7700            Impact factor:   2.537


  23 in total

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Review 4.  The future of direct-to-consumer clinical genetic tests.

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6.  Considerations for the impact of personal genome information: a study of genomic profiling among genetics and genomics professionals.

Authors:  Julianne M O'Daniel; Susanne B Haga; Huntington F Willard
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7.  The Genetic Counseling Outcome Scale: a new patient-reported outcome measure for clinical genetics services.

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8.  The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL Study.

Authors:  Sato Ashida; Laura M Koehly; J Scott Roberts; Clara A Chen; Susan Hiraki; Robert C Green
Journal:  Eur J Hum Genet       Date:  2010-07-28       Impact factor: 4.246

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Journal:  Genet Med       Date:  2008-01       Impact factor: 8.822

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  5 in total

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5.  Potential research participants support the return of raw sequence data.

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